just dx with cerebellar tonsillar ectopia

[Alicia696]

I have a question I was dx with cerebellar tonsillar ectopia. I had an mri that would show the cerebellar fuild to make sure it was moving and wasnt trapped ( I guess you would put it that way) Ok well my question is the Dr. in Pittsburgh (PA) said that I didnt have to have follow up not unless they herniate. Well if you dont follow up how do you know? I have been reading that you need to keep watch on  this but what am I supposed to do? I need help. I have vertigo, headaches, muscle weekness, balance problems but they tell me that that dosent go with the cerebellar tonsillar ectopia. This is a very good hospital but I feel uncetain with them telling me not to have follow up with a doctor to watch this. Please help me and give me a direction to go with. Or maybe there right. Any help would be great!

Thank you,
Alicia

[Alicia696]

Thanks for your input. I will have to give my primary doctor a call. She is very sweet and has tried to help me with alot of the symptoms that you mention and nothing seems to work. I dont know what my ENT thinks. They have sent me to Pittsburgh due to all the problems  they just cant handle it. They flat out told me that. (not in a mean way) I hope to get some answers on Sept. 22nd with this new NS. Im very sick of the dizzy feeling and so on an so fourth. Thanks for you help. Any help and info I cant get will hopefully lead me to some answers.

Thanks
Alicia

[rod44]

Hi Alicia696
I was misdiagnosed with Menears disease a few years ago. The main symptoms are loss of hearing in one or both ears, fullness sensation in affected ear, tinnitus, vertigo (Attacks of vertigo last no longer than 24 hours in Menears) and Nystagmus. All similar symptoms of cm/sm. My ENT said that MRI dose not show damage until the Menears is well advanced.

I was talking with my family doctor on Monday and she maid the point that the symptoms of cm/sm are many vague and various and present a challenge for diagnoses, family doctors don’t encounter this illness very often and as the symptoms are so vague and varied it is the last thing they suspect, when you have been diagnosed they only play a support and advice role as the treatment options are limited to surgery and pain & symptom management.  
The doctors in the hospitals should be leasing with your family doctor maybe you need to have a chat with your family doc about what they think is going on.

Hope this helps
rod44

[selmaS]

U r welcome Alicia.....I pray u get the help u seek.
And I look forward to ur update.

"selma"

[Alicia696]

Thanks Selma, My new Doctors appt is September 22 so I hope he can help in anyway I'll take it. An yes I have had all the testing that goes with meneires ( the spinnig chair the water in the ears to watch eye movement and it was normal). They put me in Therapy for balance and it didnt work so I just call with problems and they just dont know what to do. So Im so used to meklazin ( anti dizzy med) that it doesnt work. I was on topomax for headaches dosent work so now my neurologist put me on lamectial. So I hope this Dr. can help. If i have to watch it thats fine as long as someone will help. I told my neurologist what the Pittsburgh dr. told me and he agreed for me to get another opinion. So I will keep you updated.

Thanks again for you help!
Alicia

[selmaS]

U have menieres spelled correctly.....have they ruled this out too?....if not, u might as well look into it and get it over with...as long as it could be something else they may be reluctant to confirm ur symptoms r chiari.

I had to have many tests done too....just to rule out other conditions that share symptoms. It can be frustrating, but I also found I had other conditions as well as chiari in the process, so it is a good way to go.

I think I know who u saw in Pitsburg......and I have heard others dissapointed by his reccommendations.

U should be prepared to just have this condition monitored.......without a CSF blockage the drs may choose to wait and watch.

I understand ur frustration with ur symptoms.....and I am sure u will find a dr that can get u in a pain management program in the meantime.

Keep us posted on this next dr visit......be sure to ask him how to manage ur symptoms if he also feels u r not a surgical candidate at this time.

"selma"

[Alicia696]

Thank you Selma for your help. I do have alot of symptoms with chairi headaches, balance problems, speech problems, dizziness, constant dizziness muscle weakness, and the list goes on. The dr. in Pittsburgh told me that I dont have to have this watched well im getting a second opinion, I saw that some put a name of a dr. in Johnstown Pa a Dr. Bowels Jr. Well i made an appt. to see him cause I cant take this anymore. I have seen a ENT and they cant confrim it because they dont know what else to blame my dizziness and loss of balance from so they say it could be menieres (cant spell it) Im sick of feeling like ****!!!! Its ruinning my life. I've had balance therpy and it did not work. Anymore help would be great. I had a cine flow MRI done and they said that the fuild was moving. Thats good but help me figure out my problems. I hope this new dr. will help me. Again thanks and any other information would be great.

Alicia

[selmaS]

Hi and welcome to the Chiari forum.

With chiari u can also have an elongated brainstem...this is the area of the brain which controls balance....u should have ur inner ear checked, but it may confirm that it is chiari.
If u do not have many symptoms and no CSF blockage or overcrowding it may be ok to get checked every yr with a new MRI, but it u develope new symptoms or the ones u have get worse, get to the drs right away....also make sure if u fall, or are involved in a MVA to get checked and monitored bcuz these events can cause the tonsils to grow into what is called a herniation.

Cerebellar Tonsillar Ectopia-
This referrs to the tonsils of the cerebellum in the brain. At the bottom of the cerebellum there are two "bumps" known as the cerebellar tonsils.

Normally they are completely within the skull. The term ectopia basically means mispositioned. In tonsillar ectopia, the tonsils are lower than normal such that they begin to lie outside the skull (defined as below the foramen magnum, the large opening at the base of the skull that the spinal cord goes through).

"selma"

[Alicia696]

Thanks Dawn for the help. The doctor said that I have Chiari but it looks ok.( I heard him say to one of the nurses "where is the chiari chick" thats professional!) What ever that means. Im not sure what ectopia is either I could of spelled it wrong or heard it wrong ( to much stress). I would feel safe if they would watch it as well. I have 2 children in remission with cancer so I know what its like to make sure everything is ok. I had to dx my children with the syndrome they had and thats how i got my ohter child dx with cancer or she would have died. So I always get a second opinion. I just dont know to much about this condition so any help would be great. Ask me any questions on my children and there syndrome or cancer, I can do that but this is a whole new ballgame. :)

Thanks
Alicia

[Dawn1214]

Hi Alicia,

I was dx'd with a chiari about 2 1/2 years ago. I went through all the testing and my csf flow came back good as well. I have a neuro that has agreed to give me yearly mri's to check the flow and the size. Other neuro's that I have talked with have all told me that I do not need follow up mri's but I am more comfortable getting them just to keep an eye on it.

i am not exactly sure what ectopia is so I can't give you advice on that but if you don't feel comfortable with his answer then I would seek a second opinion and discuss the possibility of having a yearly mri and flow study to ease your mind. Also if you are having a lot of balance problems i would suggest an ENT dr. who can order and ENG test. This will tell you if you have a problem with your inner ear which would cause vertigo.

I am sure someone with more experiance will read this and help you out.

Please let us know how you are doing.

Dawn